Preparing for and Surviving the Death of a Child
Perspectives
The Magnificence of Disability
Lately I've been reading the book The Boy in the Moon: A Father's Search for
His Disabled Son, by Ian Brown. It's a memoir that many of us
will identify with, a father searching to determine the meaning and
value of his son's life, despite a rare complex medical condition and
associated disability.
Near the end of
the book, the author interviews Dr. Bruce Blumberg, a geneticist who
also happens to be blind in one eye. He states,
We're arrogant enough to
believe that sentience is all that counts. It's not all that counts. A
sequoia is not a sentient being. But they count. There is nothing
more magnificent. It doesn't require me to think about it to be in awe
of it....But it's just a mistake to think of [children with
disabilities] as lesser than.
There's no lesser than. There's just different from. It isn't just
great minds that matter. It's great spirits too.
The sequoia--the giant redwood of the west--is one of the most magnificent trees to grace our planet, and a wonder to behold. But does the sequoia talk? Does it walk? Does it read at a first grade level? No. Frankly, next to the average tree, one could even posit that the great sequoia is a tree with a disability, for it surely has a form of giganticism! All it does is grow, year after year for thousands of years, until it becomes a massive giant, amazing in its magnificence.
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Channeling Dan
by Jennifer A. Peterson
The wake of Patrick Swayze's death from pancreatic cancer serves as a bittersweet reminder of someone else I lost from the same disease: my former boss. His name was Daniel Bebble. He was a loving husband, father of four, formidable attorney, community leader, and all-around solid guy. Dan died of pancreatic cancer at the age of 37.
The approach I take in life is that everything happens for a reason, and I think I worked with Dan for a very specific purpose: to learn lessons I would later need to advocate for my child with a disability. In college, I started working for a degree in Nursing and I managed to learn a vast amount of medical terminology and anatomy, but in the end, I changed my major to Justice Studies and then went on to work for Dan. There is no doubt whatsoever the work that I did for Dan paved my future as an advocate for my children. He helped me to realize and apply my potential.
by Jennifer A. Peterson
The wake of Patrick Swayze's death from pancreatic cancer serves as a bittersweet reminder of someone else I lost from the same disease: my former boss. His name was Daniel Bebble. He was a loving husband, father of four, formidable attorney, community leader, and all-around solid guy. Dan died of pancreatic cancer at the age of 37.
The approach I take in life is that everything happens for a reason, and I think I worked with Dan for a very specific purpose: to learn lessons I would later need to advocate for my child with a disability. In college, I started working for a degree in Nursing and I managed to learn a vast amount of medical terminology and anatomy, but in the end, I changed my major to Justice Studies and then went on to work for Dan. There is no doubt whatsoever the work that I did for Dan paved my future as an advocate for my children. He helped me to realize and apply my potential.
Focus: Preparing for and Surviving the Death of a Child
An
Introduction to Pediatric Palliative Care
by Scott Millard
Life or Death. Good versus Evil. Isn't that how we have been taught to think of it? We have been conditioned to equate death with losing, and because of this we seek out any treatment available to extend life as long as possible. But what if the length of days were not the primary measure of a life? What if the quality of our days was more important than the quantity of them?
This is where Palliative Care comes in. Palliative Care is about life--quality of life. It is often misunderstood and misrepresented as being about death, and often wrongly thought of as just another term for hospice or end of life care, but that is not at all what it is about. It is about life. At its essence, palliative care is about adding life to days when days cannot be added to life.
by Scott Millard
Life or Death. Good versus Evil. Isn't that how we have been taught to think of it? We have been conditioned to equate death with losing, and because of this we seek out any treatment available to extend life as long as possible. But what if the length of days were not the primary measure of a life? What if the quality of our days was more important than the quantity of them?
This is where Palliative Care comes in. Palliative Care is about life--quality of life. It is often misunderstood and misrepresented as being about death, and often wrongly thought of as just another term for hospice or end of life care, but that is not at all what it is about. It is about life. At its essence, palliative care is about adding life to days when days cannot be added to life.
Living Your Best While Preparing for the Worst
by Jamie Barnes
After an intra-uterine insemination procedure, we were surprised to find out that all four ovums developed into embryos. But even early on we knew something was different about one: it was far smaller than the other three. By 20 weeks, we had named each baby and knew where each one was positioned. We named that little fighter Hayden.
The quadruplets were born after a relatively uncomplicated pregnancy at 32.4 weeks gestation. Hayden was the tiniest at 2 lbs 15 oz, but aside from jaundice, he was a healthy preemie breathing on his own just like his siblings: Peyton, Adrien, and Makenna.
A Process of
Grief: The
Reality of Grieving a Child with Complex Health Care Needs
by Deborah Tiel Millard
What many people don't realize is that when you have a child with complex health care needs, grieving is part of the process of life. We grieve the life we had hoped for them. We grieve the milestones they don't hit. We grieve when they can't use an age-appropriate toy again and again, one birthday after another. We grieve on days that don't necessarily make sense. Grief is quite simply part of life.
by Deborah Tiel Millard
What many people don't realize is that when you have a child with complex health care needs, grieving is part of the process of life. We grieve the life we had hoped for them. We grieve the milestones they don't hit. We grieve when they can't use an age-appropriate toy again and again, one birthday after another. We grieve on days that don't necessarily make sense. Grief is quite simply part of life.
Remembering Sebastian with Joy: Rituals of Remembrance
It's been more than three years since my son Sebastian
died.
We speak of him regularly, and
remember him actively. I want Sebastian to be remembered with joy,
especially by his two big brothers.
In the early months, finding ways to actively remember and mourn Sebastian helped me to get through the days. Later, these rituals and traditions became ways to celebrate his life and include him in our ongoing family life. We have lots of family rituals that help in our ongoing healing, and that maintain his place as an important member of our family.
Specialty Article
My daughter spent all of the 2008-9 cold and flu season unbelievably sick. Even the smallest cold--a mere day of a runny nose for her siblings--would last seven to ten days for her, most of it on lots of oxygen. A more severe bug landed her on steroids, antibiotics, or both, and she even developed sepsis from bacteria in her lungs seeping into her bloodstream. Had she not had extensive home nursing and medical technology, she probably would have needed to be hospitalized at least six times.
We spent the spring and summer of 2009 developing an appropriate respiratory routine, which her pulmonologist affectionately calls her "pulmonary toilet" routine. While she has still had many illnesses this year, they are much shorter in duration, with many fewer doses of steroids and antibiotics, and fewer serious complications
Feature Article
Cheryl S. and her son Eric, who is diagnosed with Fragile X syndrome, visited Morgan's Wonderland on a preview day, shortly before the grand opening this past April. They had a wonderful time and brought back an assortment of pictures and insider information to help prepare other families for a visit.